A new smile, and a new life for a 16-month-old
World’s top cleft surgeon heals Seda’s broken smile
by Paul Chaderjian
Lusnaghbyur, Armenia - For the Galstyan-Davtyan family in this remote village near Gyumri, life has been more difficult than the usual post-earthquake struggle for survival.
Sixteen months ago, the family's new bride, Pepron Yeghoyan, gave birth to a baby girl; the newborn, Seda Davtyan, had a cleft palate and cleft lip.
The Galstyan-Davtyan family's journey from the maternity ward to Dr. Les Mohler's operating room at the Arabkir Medical Center in Yerevan this week has been a test of their faith, a daily struggle to keep Seda alive, keep her nourished, keep her from choking on milk, and protect her from the public.
Often, on their way to doctors or to pick up government-allocated baby formula, ignorant folk would react with such insensitivity that family members would be left in tears.
"When Seda was born, I couldn't even hold the child after birth. I had not heard of or seen cleft lips or palates," explains Leyla Galstyan, who is the head of this extended family. Her husband and her brother, Seda's father, are both in Russia, where they look for work and sometimes find temporary jobs in construction.
Leyla lost her home in a 12-story building during the 1988 earthquake and had to move in with her father. The family couldn't find a place to buy with the certificate they received from the government for a domik (a small home, in Russian).
Housing prices continued to go up; and in no time at all, the certificate wouldn't cover the cost of a home in Gyumri, Armenia's second largest city.
Leyla cashed in the certificate to feed her family while her husband looked for work.
The family's only option was to move into her father's home in this village of 150, about a 10-minute drive from the city.
Leyla lives here with her kids and other relatives, all crammed into a shoddily constructed, makeshift house with a shack nearby that serves as an outhouse.
Extended family
As head of the household, Lelya has been responsible for the well-being of her father, of her four kids, of Seda, of Seda's mom, and of another niece from a younger brother and his Russian wife.
Shortly after Leyla's Russian sister-in-law gave birth to a baby girl, her brother died at the age of 23. Leyla's sister-in-law then sent the blonde, blue-eyed child back to Armenia to live with her cousins and aunts.
The family doesn't have a plot of land in this village, so they don't farm. They own no livestock, and their only sources of income is a government welfare program that pays Leyla around $140 a month.
Their financial struggle, their daily effort to sustain half-a-dozen kids and several adults was compounded when Seda was born with birth defects.
"I did not know there were kids born like this," says Leyla. "For a week, I was in shock and wondered how we were going to keep this baby. But she was ours, and we had to keep her. For about ten days, I couldn't figure out what had happened to us."
Right after Pepron delivered Seda, Leyla and her brother decided that Pepron needed to be prepared before she saw her baby.
"We didn't let our bride see the child," says Leyla. "A few hours passed. We went and tried to prepare her. Told her there's nothing wrong. It's okay, and then later, much later, we showed her the baby."
"I couldn't imagine that a child would be born like this," says Pepron, a very young, soft-spoken, diminutive woman recovering from a two-month illness. "They didn't bring me my child. I asked and said, ‘Let me see the child.'"
Pepron's first question was whether she had a boy or a girl. Her husband told her it was a girl, and she was disappointed because he had been wanting their firstborn to be a boy.
"I kept asking, please let me see her," she says. "They said, ‘Let's take care of your first and then we'll bring the baby to you.' An hour or two passed, and I kept asking to see the baby. They moved me to another room, but my husband's mood was not good. I kept asking, ‘What's happening? Why are you sad?' And they didn't say anything. I was asking, ‘What does the child look like? Who does it look like?'"
Leyla sat with Pepron and told her, "The baby has a harelip, but she is okay. She's beautiful."
"Then they brought the baby to me," says Pepron. "I don't know how to explain what I felt. We've kept this baby with great difficulty. My sister-in-law has helped me feed her. Leyla has been at my side. My husband was out of work, and then I got sick. It was one tragedy after another until this operation."
Keeping Seda alive
When Seda wasn't able to breastfeed, her doctors ask her family to nourish her with baby formula. Since Seda wasn't able to suckle and use a bottle, she had to be fed with spoonfuls of milk.
"But the child was choking with each spoonful," says Leyla. "Until now, we are still very careful about how to give her food. Two weeks ago, she fell, and she broke a tooth, because the teeth are exposed. Her mouth was open, and it's been very problematic."
Seda's doctors in Gyumri referred her to Dr. Harach Arshakyan at the Arabkir Medical Center in Yerevan.
"The doctors said it would cost $1,000 to $1,500 for the surgery," says Leyla, "but Dr. Arshakyan said the American doctors were coming and would do the surgery free of charge. Not only would the surgery be free, but the doctors coming were the best in the world."
Leyla and Pepron brought little Seda to the hospital last Saturday for the two-day screenings, and Leyla found the surgeons and Smile Network volunteers to be very kind and big-hearted.
"On behalf of all the parents here," Pepron tells the Armenian Reporter, "I want to thank the doctors and the Armenians in the U.S. for making this possible. To the Smile Network, to the news reporters, and to you, thank you very much."
Leyla says Seda was a godsend, and she knew that God would also provide for her. Her greatest fear was that Seda would die in her arms and while under her care. If that ever happened, she says, she wouldn't have been able to live with herself.
"If she was born like this," she says, "then God wanted her to be born like this. Who is at fault here? If God was giving us Seda with these problems, I was certain he would open a door to revive her health. God is great and always opens a door when he closes a door. I have never lost my faith from Day One."
Ignorance, shame
With Seda's successful surgery, the shame and insensitive reactions the family received will be a part of the past.
"We were ashamed and felt uncomfortable," says Leyla. "To this day, we took Seda to all her appointments by taxi and never in public transport. People always look, and we felt bad. We always take a taxi so they don't stare. People sit in the minibuses and stare at Seda. Some would get afraid. They would get emotional. They would feel bad for Seda."
Leyla recounts one incident early on when she vowed to protect Seda from gawkers. She and Pepron had just arrived in Gyumri for consultations and to pick up their monthly allocation of baby formula when a woman on the street saw them and screamed, "Vay, mama jan" or "Holy Mother of God."
"Then, I started crying, my blood pressure went up, and I became ill just thinking this stranger saw our baby and really got upset," says Leyla. "There have been moments like that. But since that moment, I promised myself never to take Seda out in public again."
Life for the Galstyan-Davtyan family will never be the same. After Seda's successful operation, all family members can express is gratitude. Leyla says that moms and dads anywhere in the world, facing anything similar to their difficulties, should not give up hope.
"Because there are organizations like this, there is a chance for their child to be healed," she says. "They will find these children and bring them the positive results. God will change the hearts of donors and make them make it possible to help heal children in all the corners of the world, so that they can be normal and lead normal lives. So that this person or that person doesn't laugh at them or say, ‘don't play with this child.' I hope no child ever experiences that, and I want all mothers to believe that there are patrons who will come to their aid and help their children be normal."
by Paul Chaderjian
Lusnaghbyur, Armenia - For the Galstyan-Davtyan family in this remote village near Gyumri, life has been more difficult than the usual post-earthquake struggle for survival.
Sixteen months ago, the family's new bride, Pepron Yeghoyan, gave birth to a baby girl; the newborn, Seda Davtyan, had a cleft palate and cleft lip.
The Galstyan-Davtyan family's journey from the maternity ward to Dr. Les Mohler's operating room at the Arabkir Medical Center in Yerevan this week has been a test of their faith, a daily struggle to keep Seda alive, keep her nourished, keep her from choking on milk, and protect her from the public.
Often, on their way to doctors or to pick up government-allocated baby formula, ignorant folk would react with such insensitivity that family members would be left in tears.
"When Seda was born, I couldn't even hold the child after birth. I had not heard of or seen cleft lips or palates," explains Leyla Galstyan, who is the head of this extended family. Her husband and her brother, Seda's father, are both in Russia, where they look for work and sometimes find temporary jobs in construction.
Leyla lost her home in a 12-story building during the 1988 earthquake and had to move in with her father. The family couldn't find a place to buy with the certificate they received from the government for a domik (a small home, in Russian).
Housing prices continued to go up; and in no time at all, the certificate wouldn't cover the cost of a home in Gyumri, Armenia's second largest city.
Leyla cashed in the certificate to feed her family while her husband looked for work.
The family's only option was to move into her father's home in this village of 150, about a 10-minute drive from the city.
Leyla lives here with her kids and other relatives, all crammed into a shoddily constructed, makeshift house with a shack nearby that serves as an outhouse.
Extended family
As head of the household, Lelya has been responsible for the well-being of her father, of her four kids, of Seda, of Seda's mom, and of another niece from a younger brother and his Russian wife.
Shortly after Leyla's Russian sister-in-law gave birth to a baby girl, her brother died at the age of 23. Leyla's sister-in-law then sent the blonde, blue-eyed child back to Armenia to live with her cousins and aunts.
The family doesn't have a plot of land in this village, so they don't farm. They own no livestock, and their only sources of income is a government welfare program that pays Leyla around $140 a month.
Their financial struggle, their daily effort to sustain half-a-dozen kids and several adults was compounded when Seda was born with birth defects.
"I did not know there were kids born like this," says Leyla. "For a week, I was in shock and wondered how we were going to keep this baby. But she was ours, and we had to keep her. For about ten days, I couldn't figure out what had happened to us."
Right after Pepron delivered Seda, Leyla and her brother decided that Pepron needed to be prepared before she saw her baby.
"We didn't let our bride see the child," says Leyla. "A few hours passed. We went and tried to prepare her. Told her there's nothing wrong. It's okay, and then later, much later, we showed her the baby."
"I couldn't imagine that a child would be born like this," says Pepron, a very young, soft-spoken, diminutive woman recovering from a two-month illness. "They didn't bring me my child. I asked and said, ‘Let me see the child.'"
Pepron's first question was whether she had a boy or a girl. Her husband told her it was a girl, and she was disappointed because he had been wanting their firstborn to be a boy.
"I kept asking, please let me see her," she says. "They said, ‘Let's take care of your first and then we'll bring the baby to you.' An hour or two passed, and I kept asking to see the baby. They moved me to another room, but my husband's mood was not good. I kept asking, ‘What's happening? Why are you sad?' And they didn't say anything. I was asking, ‘What does the child look like? Who does it look like?'"
Leyla sat with Pepron and told her, "The baby has a harelip, but she is okay. She's beautiful."
"Then they brought the baby to me," says Pepron. "I don't know how to explain what I felt. We've kept this baby with great difficulty. My sister-in-law has helped me feed her. Leyla has been at my side. My husband was out of work, and then I got sick. It was one tragedy after another until this operation."
Keeping Seda alive
When Seda wasn't able to breastfeed, her doctors ask her family to nourish her with baby formula. Since Seda wasn't able to suckle and use a bottle, she had to be fed with spoonfuls of milk.
"But the child was choking with each spoonful," says Leyla. "Until now, we are still very careful about how to give her food. Two weeks ago, she fell, and she broke a tooth, because the teeth are exposed. Her mouth was open, and it's been very problematic."
Seda's doctors in Gyumri referred her to Dr. Harach Arshakyan at the Arabkir Medical Center in Yerevan.
"The doctors said it would cost $1,000 to $1,500 for the surgery," says Leyla, "but Dr. Arshakyan said the American doctors were coming and would do the surgery free of charge. Not only would the surgery be free, but the doctors coming were the best in the world."
Leyla and Pepron brought little Seda to the hospital last Saturday for the two-day screenings, and Leyla found the surgeons and Smile Network volunteers to be very kind and big-hearted.
"On behalf of all the parents here," Pepron tells the Armenian Reporter, "I want to thank the doctors and the Armenians in the U.S. for making this possible. To the Smile Network, to the news reporters, and to you, thank you very much."
Leyla says Seda was a godsend, and she knew that God would also provide for her. Her greatest fear was that Seda would die in her arms and while under her care. If that ever happened, she says, she wouldn't have been able to live with herself.
"If she was born like this," she says, "then God wanted her to be born like this. Who is at fault here? If God was giving us Seda with these problems, I was certain he would open a door to revive her health. God is great and always opens a door when he closes a door. I have never lost my faith from Day One."
Ignorance, shame
With Seda's successful surgery, the shame and insensitive reactions the family received will be a part of the past.
"We were ashamed and felt uncomfortable," says Leyla. "To this day, we took Seda to all her appointments by taxi and never in public transport. People always look, and we felt bad. We always take a taxi so they don't stare. People sit in the minibuses and stare at Seda. Some would get afraid. They would get emotional. They would feel bad for Seda."
Leyla recounts one incident early on when she vowed to protect Seda from gawkers. She and Pepron had just arrived in Gyumri for consultations and to pick up their monthly allocation of baby formula when a woman on the street saw them and screamed, "Vay, mama jan" or "Holy Mother of God."
"Then, I started crying, my blood pressure went up, and I became ill just thinking this stranger saw our baby and really got upset," says Leyla. "There have been moments like that. But since that moment, I promised myself never to take Seda out in public again."
Life for the Galstyan-Davtyan family will never be the same. After Seda's successful operation, all family members can express is gratitude. Leyla says that moms and dads anywhere in the world, facing anything similar to their difficulties, should not give up hope.
"Because there are organizations like this, there is a chance for their child to be healed," she says. "They will find these children and bring them the positive results. God will change the hearts of donors and make them make it possible to help heal children in all the corners of the world, so that they can be normal and lead normal lives. So that this person or that person doesn't laugh at them or say, ‘don't play with this child.' I hope no child ever experiences that, and I want all mothers to believe that there are patrons who will come to their aid and help their children be normal."
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